Honor pledge to those with developmental disabilities

Virginia stands at a pivotal moment in its history, poised to uphold its commitment to ensuring “A Life Like Yours” for all its citizens, including those with developmental disabilities. The recent allocation of $200 million in the state budget to eliminate the priority-one waitlist for Medicaid waivers marks an historic moment to be recognized and celebrated. At long last, this funding promises access to crucial services for thousands of individuals identified as needing support.

However, it’s crucial to recognize that merely funneling funds into the existing system won’t suffice. Virginia must strive for a more integrated, individualized approach that aligns with the desires of those on the waitlist and the many people currently receiving services for which individualized support has not been an option.

Reflecting on the past reveals a stark reality: Throughout history, Virginians with disabilities were relegated to separate institutions, far removed from community life. It wasn’t until the emergence of group homes in the 1960s that people and families began to realize less restrictive alternatives to institutionalization. Even then, progress was slow, with the inertia of outdated norms hindering the transition to more inclusive and integrated support in the commonwealth.

Finally, in 1999, the landmark Olmstead v. L.C. Supreme Court decision affirmed the right of individuals with disabilities to live within their communities, setting a precedent against discrimination. Virginia, however, continued to lag behind, prompting a 2012 settlement agreement with the US Department of Justice to prevent unnecessary institutionalization and promote community integration. This agreement emphasized the three pillars of integration, self-determination and quality services, underscoring the need for access to support tailored to individuals’ needs that empower people to lead fulfilling lives. Lives not just in the community, but lives of the community and a system of individualized support to make them possible.

However, despite strides towards individualized and integrated care, Virginia grapples with a glaring shortage of providers of individualized support, with fewer than 4% of waiver recipients able to access these newer support models.

For example, Virginia boasts 621 group-home providers operating more than 1,500 group homes supporting close to 6,000 individuals across the commonwealth. On the other hand, Virginia has only produced 23 providers of supported living, thereby restricting access to the opportunity to live in one’s own apartment with access to 24/7 support to about 300 people across the commonwealth. This creates a significant disparity and essentially makes Virginia a service desert for the support that most individuals on the waitlist express a desire for, and one of the exact services Virginia created to become compliant with the DOJ settlement agreement.

To honor its commitment to “A Life Like Yours,” we ask Virginia to address this provider shortfall head-on with funding targeted to development of inclusive DOJ aligned services. Incentivizing and supporting the growth of providers in the individualized and integrated support sector is paramount. Both new and existing providers must be equipped to adapt their services to meet evolving needs with a solution that includes the three critical components of technical assistance, infrastructure grants to help cover start-up costs, and training opportunities to empower providers to embrace more person-centered approaches, fostering a culture of inclusivity and choice.

In closing, thank you, Gov. Glenn Youngkin and our state legislature for a budget that fulfills your promise to end the priority-one wait list. However, only by prioritizing the development of a robust provider base for individualized and integrated support can Virginia honor its promise of inclusion and empowerment.

This is the time for decisive action — a chance to shape a future where every Virginian, regardless of ability, can thrive.

Grey Persons of Norfolk is president of The Arc of Virginia Board of Directors. The

Arc of Virginia is the statewide advocacy organization made up of people with developmental disabilities, their family members and their allies, who are fighting for “A Life Like Yours” for Virginians with developmental disabilities.